S P E E C H A N D L A N G U A G E T H E R A P I S T Empowering People with Dementia to become active participants in present and future care decisions P H A S E 1 O U T C O M E O F A P R O J E C T U S I N G A P I C T O R I A L C O M M U N I C A T I O N T O O L C A L L E D T A L K I N G M A T S M A R Y W A L S H S P E E C H A N D L A N G U A G E T H E R A P I S T N O V E M B E R 6 TH 2 0 1 8

What is Talking Mats? Talking Mats is an evidence based pictorial communication system for people with communication difficulties. It is designed to help get their views and support decision making. It is empowering because it aims to support the person to have as much control of the conversation as as possible. Training is required to use this effectively. See example below: the topic is on the bottom of the mat – lunch; the top-scale is e.g. “I like, I don’t like or somewhere in between”. The pictures in the middle are options. See www.talkingmats.com for further information

Issues addressed by this project In 2016, I won the Dementia Elevator Award and became a Talking Mats Trainer. The initial phase of this project involved training 6 speech and language therapists who trialled using this tool with 3 patients/residents each in their own work settings. Aims of the Project Inclusion of the person with dementia in decision making regarding current and future needs and wishes – Assisted Decision Making (Capacity) Act 2015 Development of a mutually supportive group of speech and language therapists to explore the use of TM in relation to the ADM (Capacity) Act 2015. Person centred care – hand over as much control as possible Empowerment of persons with dementia and their carers Provision of TM training to this group of SLTs in Phase 1

Assisted Decision Making (Capacity) Act 2015. Some selected key points Assisted decision making is when a person whose capacity to make a decision is in question can appoint a person to assist, co-decide or has somebody appointed to represent them for the purpose of making a decision. Who does ADMA affect? The provisions of the act are not limited to people with a disability or impairment but applies to any person whose decision-making capacity is in question. Anybody may need to use the provisions of the Act at one time or another. What is capacity? The Act defines Capacity as “decision making capacity” and it is the ability to understand, at the time that a decision is to be made, the nature and consequences of the decision to be make by him/ her in the context of the choices available at the time. What is decision-making assistance? A person whose capacity is in question or will shortly be in question chooses another person to assist them to make decisions. A decision-making agreement is drawn up to say what decisions are involved. The decisions can be property or personal welfare or both. A person can have one or more decision- making assistants to act jointly or separately. The assistant will assist the person making the decision to get the information needed to make the decision, explain the information to the person and to get the person’s will and preference in relation to the decision. The assistant will also communicate the decision and follow up on the decision to ensure it is implemented.

What we did/What they said The SLTs used TM with PwD in their own settings including acute, outpatient clinics, intellectual disability service, residential care and community care. They explored the use of TM as an aid to getting to know someone, in care planning, in providing increased opportunities for interaction and in improving choices/ decisions. Each TM was video recorded (with consent) and the conversations were analysed by the group. A report is being compiled on the findings which will be available at the end of 2018. Some comments by the therapists: “It allowed the medical team get more information about her health” “He asked several questions – he doesn’t generally!” “TM allowed Sheila to talk openly” It put the PwD in control of the conversation

make decisions about their care. Emerging key themes All the speech and language therapists found that TM helps to empower PWD to make decisions about their care. They also found: The pictures aided comprehension TM helped PWD to maintain attention to the topic TM facilitated strengths rather than focusing on what the person cannot do TM reduced pressure on the PwD and allowed them to feel comfortable with SLT TM was shown to be a significant catalyst for change in the person’s care. SLTs found that the influence of the environment was an important factor It helped PwD with challenging behaviour/ communications of distress to get their needs met, thus reducing these behaviours.

Case Study 1 - Sheila Setting: Care of Older Persons Ward, Acute Hospital. Topic: Communication Sheila presented to hospital with general decline with a background history of stroke and mild vascular dementia. She was very aware of her word-finding difficulties. Comprehension OK for TM. She had good insight into her communication difficulties but had difficulty expressing this. The Talking Mats sessions: allowed Sheila to talk openly about her communication, what she was struggling with and what she found easy. It gave a clear reference point for conversation. “It was great to see her initiating topics and expressing her feelings and wishes.” “ ….a wealth of communication can be captured where there is a focus….she demonstrated a rich variety of non-verbal communications captured through video recording.” (with patient consent.)

Case Study 2 - Barry Setting: Residential Care Topic: Food and Drink Barry has a severe speech disorder resulting from stroke 2 years ago – very unintelligible. Mild- moderate swallowing difficulty and mild cognitive difficulties. Adequate comprehension for TM. He uses a communication book to express basic needs and cannot write. He is a new resident finding it very difficult to settle in. Significant challenging behaviour at mealtimes. TM stimulated conversation verbally and with gesture around opinions and views on the topic. It was a great way to focus him to topic and get his views on food and drinks. As he was not understood, staff were giving him food he did not like at breakfast and dinner. He did not like porridge or gravy but got these daily, provoking many outbursts. He was able to express this through TM and so alternatives were found. This improved his enjoyment of the meals, decreased challenging behaviour and improved the situation for staff. TM stimulated the targeted conversation and was the catalyst for change